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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Cancer but no prognosis

62 replies

ocrendby · 02/04/2023 09:56

FIL has been diagnosed with prostate cancer that has apparently got into his bones.

DH is obviously in bits about it.

FIL has refused a prognosis as he just wants to live his life.

I've done plenty of reading about prognoses for stage 4 prostate cancer and have a bit of an understanding about cancer in general. It seems to me that he may well have another 5-10 years with modern treatments.

When DH said that his dad is dying I said not necessarily and that FIL not getting a prognosis wasn't helping anyone.

I get that this is disrespectful to FIL's wishes but I'm looking at DH always worrying and almost putting his life on hold and so AIBU to feel this way?

My own DH died of pancreatic cancer so very quick after it was identified.

OP posts:
Untitledsquatboulder · 02/04/2023 10:02

The cancer has metastasised so is stage 4 ie terminal. In my personal experience (sample size 2) when it moves into your bones there is little time left but perhaps my experience isn't typical or treatments have moved on in the last few years. Nevertheless if I had to guess I'd say 5-10 years is optimistic.

Original poster
ocrendby · 02/04/2023 10:04

Cancer research uk says this

Stage 4
Stage 4 can mean different things, including:
• the cancer has spread into nearby body organs, such as the back passage or bladder
• the cancer has spread to nearby lymph nodes
• the cancer has spread to other parts of the body outside the pelvis, such as the lungs or liver
Around 50 out of every 100 men (around 50%) will survive their cancer for 5 years or more after they are diagnosed.

www.cancerresearchuk.org/about-cancer/prostate-cancer/survival

OP posts:
katieak · 02/04/2023 10:04

Sometimes it's better not to know so that you make the most of every day you have left with them because you never know when the worst will happen and don't spend the time counting down for the impending sadness.

Original poster
ocrendby · 02/04/2023 10:05

I understand that's better for him but I don't feel like it's better for DH who is going to put his own life on hold

OP posts:
coffeecupsandwaxmelts · 02/04/2023 10:06

ocrendby · 02/04/2023 10:05

I understand that's better for him but I don't feel like it's better for DH who is going to put his own life on hold

But as horrible as it is, this isn't about your DH.

It's FIL's body and health - it's up to him if he doesn't want to know.

TheGoogleMum · 02/04/2023 10:07

It's hard to say. He's right that his dad is dying in the sense he won't be cured, you are right that it could be years yet so putting life on hold could be for a long time. Even if you had a prognosis they aren't always accurate, I had a relative be told she had 6 months but actually managed 3 years!
Sorry OP that you and family are experiencing this, cancer is a horrible disease

Original poster
ocrendby · 02/04/2023 10:08

DH upset with me that I said that and I completely understand why.

OP posts:
Schnooze · 02/04/2023 10:08

Presumably he is accepting treatment?

LuvSmallDogs · 02/04/2023 10:10

It's his cancer, not yours, leave him alone and if you get cancer you can deal with it however you want.

Theluggage15 · 02/04/2023 10:10

Prognosis isn’t always very accurate or helpful and this is about your FIL not your husband. He has to respect his dad’s wishes. I don’t understand why he would be putting his life on hold anyway.

Original poster
ocrendby · 02/04/2023 10:11

Yes. Just when they offer a prognosis (twice now) he has said he doesn't want to know.

It's terrible news and losing a parent is horrible, I know that. And I should have kept my mouth shut. FIL lives 4 hrs away so DH wants to see him as much as possible and feels guilty as he can't always be there

OP posts:
Albiboba · 02/04/2023 10:11

No proper advice or information for you but FIL has also been diagnosed with prostate cancer the last few days and awaiting further info on whether it has gone to the bones or not too.
His brother also has prostate cancer which has spread to other places but he has been able to enjoy a relatively normal life for the past 10 ish years.

Not everyone wants to hear the likely outcome. MIL also just recently passed from breast cancer. She didn’t want to know a detailed prognosis or anything negative about it really. She ended up passing relatively quickly after the cancer came back and so it came as a shock to DH but ultimately it was her wishes that she didn’t want to know.
Everyone copes differently.

MereDintofPandiculation · 02/04/2023 10:15

It’s FIL who has to cope with this, you can’t force him to seek a prognosis. My own DH is working on the basis he’s got 20 years at least, it’s his way of coping.

So DH needs to find a way to come to terms with it. You can try reminding him of the prevalence of prostate cancer in,say, over 80s, that Stage 4 prostate cancer is aimed at keeping it at bay long enough for them to die of something else. If nothing else, FIL will be spared dementia.

Persuade DH that his best contribution is to make his remaining time with DH as good as it possibly can be.

Howmanysleepsnow · 02/04/2023 10:15

I get it OP. My dad has prostate cancer. It’s spread to his lymph nodes, and probably (given the pain, he’s waiting on a scan) his bones. I’d prefer to know a timescale, as far as is possible, to make the most of the time left, but I fully respect he may choose not to know.
i understand he may live 10 years. I strongly suspect he won’t.
He might not be “dying” right now, but he is dying and I’m mentally and emotionally preparing for that. It’s traumatic, and I don’t think someone telling me that it’s potentially such a long process it doesn’t count would be something I’d appreciate.

slight hijack, but if anyone has anecdotal evidence of how long someone has lived after similar spread in stage 4 I’d appreciate it. Obviously it may be different for my dad, but not knowing is hard!

Original poster
ocrendby · 02/04/2023 10:18

My friend was given six months to live in Jan 2020 and he is still with us.
I feel that a prognosis is not actually a hard and fast rule for time, but almost a level of the doctor giving a level of how bad he/she thinks the cancer has got.
As stage 4 means it has metastasised, but actually there are levels of how far metastasis has occurred and with modern treatments the further spread of the cancer can be kept in check.
So a doctor can give you six months if there are huge metastasised tumours, or 5 years if these are minor.
If FIL would have accepted a prognosis this would help all involved- not me but MIL and DH

OP posts:
Original poster
ocrendby · 02/04/2023 10:19

My friend's cancer is not prostate

OP posts:
Original poster
ocrendby · 02/04/2023 10:22

Sorry I just reread the OP and meant to say my own DDad died of pancreatic cancer

OP posts:
Blossomtoes · 02/04/2023 10:22

coffeecupsandwaxmelts · 02/04/2023 10:06

But as horrible as it is, this isn't about your DH.

It's FIL's body and health - it's up to him if he doesn't want to know.

Show quote history

This. I really hope my kids wouldn’t make it all about them if I had terminal cancer.

LuvSmallDogs · 02/04/2023 10:24

ocrendby · 02/04/2023 10:18

My friend was given six months to live in Jan 2020 and he is still with us.
I feel that a prognosis is not actually a hard and fast rule for time, but almost a level of the doctor giving a level of how bad he/she thinks the cancer has got.
As stage 4 means it has metastasised, but actually there are levels of how far metastasis has occurred and with modern treatments the further spread of the cancer can be kept in check.
So a doctor can give you six months if there are huge metastasised tumours, or 5 years if these are minor.
If FIL would have accepted a prognosis this would help all involved- not me but MIL and DH

Right, and the times where treatment is unsuccessful, where doctors say "but this cancer doesn't usually do that o_O"? Or are we only thinking of the "good" outliers?

This is your FIL's cancer, not MIL's, not DH's. By all means, pile some more emotional labour on the actual cancer patient because you've googled and he has years left and you're struggling with your DH's emotional reaction.

Untitledsquatboulder · 02/04/2023 10:24

I guess this is all quite recent OP. Let your dh be with his father as often as he's able. Either your FiL will continue well and your dh will feel reassured when nothing much is changing bw visits or he will deteriorate in which case being with him is the right thing for both of them.

OldSkoolLikeHappyShopper · 02/04/2023 10:25

My daughter’s father has prostate cancer and is refusing any treatment, even though the initial scans he had showed it was in the early stages and would be treatable. He has read horror stories about becoming impotent/incontinent after surgery and decided he’d rather be dead. No idea how long he has. It’s so upsetting as I love him dearly (as a friend), and DD will be devastated to lose him.

buttercupboots · 02/04/2023 10:28

My DF was diagnosed with prostate cancer in 2021 but wasn't able to have prostate removal as it had spread to nearby lymph nodes. He had radiotherapy in 2022 alongside hormone treatment and it seemed to be effective in that it brought his PSA levels down initially however by the end of 2022 it had spread to multiple sites in his bones.

When he was first diagnosed he was given the life expectancy of 10 years. I don't know what it is now, but he has been told that his life expectancy has significantly reduced. This is because his cancer is aggressive and spreading quickly, which is an outlier when talking about prostate cancer which is often slow moving.

He's currently on a mix of hormone treatments & steroids to try to keep it from spreading further. He keeps himself healthy and other than him seeming more tired than usual, you wouldn't know he was ill if you met him.

Essentially, from what I know of it (which is limited to what I'm told!) it depends on how aggressive the cancer is i.e how quickly it will spread and how effective the treatments are on that type of prostate cancer. Some hormone treatments/radiotherapies are incredible for some people, but not so effective for others.

Hope this helps but I'm still muddling through it myself!

Houseyvibe · 02/04/2023 10:31

You are correct in that prostate cancer in the bones especially in older people is very controllable and it is perfectly possible he will die with it not from it and it’s not usual to be controlled for many many years with minimally invasive treatment. Prostate in older me is often fairly slow growing.

However, I do understand that a prognosis isn’t necessarily helpful although pointing your DH to stats once the initial shock has worn off may well be. Let him process his shock but it’s highly in your FIL favour that they’ll be able to control it for a really good amount of time and his quality of life will be maintained

Original poster
ocrendby · 02/04/2023 10:32

Untitledsquatboulder · 02/04/2023 10:24

I guess this is all quite recent OP. Let your dh be with his father as often as he's able. Either your FiL will continue well and your dh will feel reassured when nothing much is changing bw visits or he will deteriorate in which case being with him is the right thing for both of them.

Thanks. This is what I needed to hear. You're right, it's recent and my DH needs time to process it. He will travel every opportunity for the foreseeable and I guess it will ease off a bit

OP posts:
Popsicle42 · 02/04/2023 10:33

My mum didn’t want to know timescales when her cancer became terminal. I had to accept her decision. It was tough not knowing, but then you never really know anyway and I think it would be worse to be given a prognosis that is wrong so you end up feeling like you’re constantly on borrowed time.